1.

Record Nr.

UNINA9910464757603321

Autore

Schriever K.-H. <1948->

Titolo

G3P : good privacy protection practice in clinical research : principles of pseudonymization and anonymization / / Karl-Heinz Schriever, Markus Schröder

Pubbl/distr/stampa

Berlin ; ; New York : , : De Gruyter, , [2014]

©2014

ISBN

3-11-028328-X

3-11-038159-1

Descrizione fisica

1 online resource (210 p.)

Classificazione

PZ 4700

Disciplina

610.72/4

Soggetti

Clinical trials - Research

Data protection

Medical care - Research

Medical records - Access control

Privacy, Right of

Electronic books.

Lingua di pubblicazione

Inglese

Formato

Materiale a stampa

Livello bibliografico

Monografia

Note generali

Description based upon print version of record.

Nota di bibliografia

Includes bibliographical references (pages [191]-196) and index.

Nota di contenuto

Study modes -- Protection masks and procedures -- Coding methods for de-identified samples/data -- Relationships among the protection masks -- Data types -- Anonymization -- Validation : a brief introduction -- Request management -- Legal requirements & regulations -- Informed consent -- Selected data protection & medical sites -- Impact of external services on data protection -- Practical approach to clinical trials with supplementary genetic parts.

Sommario/riassunto

Establishing ethical and privacy protection aspects in scientific research, especially in medical research, has a long history. Medical data are usually more sensible than other personal data and require therefore an even higher degree of protection than other personal data. In recent research projects genetic evaluations become more and more important and trigger thereby new and continuing activities in the context of data protection. Genetic data as a subset of medical data are the most sensible category of personal data and require therefore the



highest degree of data protection.The book provides a systematic and itemized approach to data protection in clinical research including the handling of genetic material, genetic samples as well as derived genetic data and the subsequent secure storage of them. The set up of different kinds of clinical trials having in addition a genetic part, the concept of a genetic informed consent as well as collection schemes of samples are described in detail. Technical requirements and aspects of data protection including pseudonymization and anonymization procedures taking into account ethics committees requirements as well as the underlying legal framework are also presented.Without any exception, all principles and methods presented are best practices, repeatedly applied in different clinical environments and by no means theoretical considerations.

2.

Record Nr.

UNINA9910867281103321

Autore

Rogers Katina L

Titolo

The Presence of Absence : Meditations on the Unsayable in Writing

Pubbl/distr/stampa

Earth, Milky Way : , : Punctum Books, , 2024

©2024

ISBN

1-68571-165-0

Edizione

[1st ed.]

Descrizione fisica

1 online resource (0 pages)

Disciplina

809/.9338

Soggetti

Ineffable, The, in literature

Grief in literature

Loss (Psychology) in literature

Absence in literature

Ineffable dans la littérature

Chagrin dans la littérature

Perte (Psychologie) dans la littérature

Absence dans la littérature

Lingua di pubblicazione

Inglese

Formato

Materiale a stampa

Livello bibliografico

Monografia



Nota di contenuto

240618presenceofabsence-cover-ebook-front -- 240617presenceofabsence-print.

Sommario/riassunto

The Presence of Absence: Meditations on the Unsayable in Writing is about writers navigating the unspeakable through image, sound, and structure. Each chapter focuses on a specific text, exploring the ways that four writers look to visual and auditory materials and metaphors as passageways to understanding and expressing the ineffable qualities of relationships, identity, and grief. Through gorgeously slow and close readings, Rogers explores absence and excess, fragmentation and translation, and -- above all -- the push and pull between presence and absence, with absence carrying as much significance as presence (and sometimes more).The Presence of Absence crosses languages and disciplines, working in French and English across poetry, photography, history, and literary theory. Through investigations of Nox by Anne Carson, Quelque chose noir by Jacques Roubaud, Wayward Lives, Beautiful Experiments by Saidiya Hartman, and Le livre des questions by Edmond Jabès, Rogers explores various truths -- about loss but also about knowledge, beauty, even higher education -- that are difficult to articulate and yet resonate deeply with lived experience.